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What happens after treatment for chronic myeloid leukemia?

For a few people with chronic myeloid leukemia (CML), treatment may remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer coming back. (When cancer comes back after treatment, it is called recurrence.) This is a very common concern in people who have had cancer.

For most patients with CML, treatment doesn't end and they stay on a tyrosine kinase inhibitor (TKI) like imatinib indefinitely. Often, the TKIs keep the CML in check, but they don't seem to cure this disease. Being on long-term treatment can be difficult and very stressful. It has its own type of uncertainty. See When Cancer Doesn't Go Away for more about this.

Follow-up care

Even if there are no signs of the disease, your doctors will still want to watch you closely. It is very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you are having and may do exams and lab tests to look for signs of CML and treatment side effects. Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.

It is important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

Seeing a new doctor

At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who does not know anything about your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy:

A copy of your pathology report(s) from any biopsies or surgeries

If you had surgery, a copy of your operative report(s)

If you were in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home

If you had radiation therapy, a copy of your treatment summary

If you had drug treatment (chemotherapy, interferon, or targeted therapy), a list of the drugs, drug doses, when you took them, and how your CML responded to the drug(s)

The doctor may want copies of this information for his records, but always keep copies for yourself.